Cellular Fiction: A Collaborative Visual Narrative Platform For Cancer Patients and Caregivers by Hriday Gami

DD507 Design Project 2015

Cellular Fiction: A Collaborative Visual Narrative Platform For Cancer Patients and Caregivers Hriday Gami 144205004 Project Guide Prof. Ravi Mokashi Punekar Project Coordinator Prof. Manoj Majhi

Department of Design Indian Institute of Technology Guwahati

Certificate

This is to certify that the project report entitled â&#x20AC;&#x153;Cellular Fiction: A Collaborative Visual Narrative Platform For Cancer Patients and Caregiversâ&#x20AC;?, is an authentic work carried out by Hriday Gami 144205004 at Department of Design, Indian Institute of Technology Guwahati. The matter embodied in this project work has not been submitted earlier for award of any degree or diploma to the best of my knowledge and belief.

Project Guide:

Project Coordinator:

Examiner 1:

Examiner 2:

Declaration: IPR

I the under signed student declare that in accordance to the IPR norms generally followed in Academics, I have acknowledged appropriately all sources of material/ content including visuals/ designs/ copy rights accessed from others authors/ sources/ references used in this project as part of my academic reporting. I declare that the contents of this project report including visuals/ designs other than those whose origin/ source has been appropriately acknowledged, are a result of our original efforts.

Hriday Gami Master of Design, 144205004 Department of Design, IIT Guwahati May, 2015

Acknowledgements

I would like to express my deepest gratitude to Prof. Ravi Mokashi Punekar for his guidance and support throughout this project. This experimental project would not have been possible without his insightful discussions and constant encouragement. I would also like to thank Dr. Bibhuti Borthakur and Dr. Kaveri Das for sharing years of experience and expertise in the field of cancer, and Dr. Seema Khanwalkar for envisioning the project. I thank the faculty members at the Department of Design, IIT Guwahati for their inputs at various stages of the project. Last but not least, I would like to thank all the people who have shared with me, in a remarkably open manner, the story of illness in their lives.

III

Table of Contents

Certificate IPR Declaration Acknowledgement Abstract

I II III 01

Chapter 1 Introduction 1.1 Need 1.2 Problem Statement 1.3 Aims 1.4 Objectives

02 02 03 03

Chapter 2 Literature Review 2.1 Cancer: Suffering and Care 2.2. Web and Mobile Platforms for Cancer 2.3 Storytelling, Fiction and Narrative Therapy 2.4 Interactive and Collaborative Storytelling in Digital Media

04 05 06 07

Chapter 3 Methodology- Human Centered Design 3.1 Epathize 3.2 Define 3.3 Ideate/ Brainstorm 3.4 Prototype and Test

08 10 11 12

Chapter 4 Experiments and Observations 4.1 Experiment- Phase I 4.1.1 Structure 4.1.2 Limitations 4.1.3 Results and Inferences

13 13 13

Table of Contents

Experiments and Observations 4.2 Experiment- Phase II 4.2.1 Structure 4.2.2 Limitations 4.2.3 Results and Inferences

14 14 15

Chapter 5 Discussion and Conclusion The Way Forward

16 17

References Bibliography

Abstract

Cellular Fiction is a platform for interactive visual storytelling and collaborative writing. The aim of Cellular Fiction is to alleviate anxiety amongst cancer patients and caregivers to enhance the quality of life during and post treatment. The project intends to transform the negative discourse around cancer in the Indian society into an optimistic one and open the black box of cancer in a positive manner. The primary objective of the project is to provide a supportive healthcare platform that compliments the course of targeted medical treatment. This platform addresses the patientâ&#x20AC;&#x2122;s emotional and psychological needs by providing a collaborative third space by combining concepts from psychology, literature and design. Keywords: Human Centered Design, Visual Narratives, Interactive Storytelling, Collaborative Writing, Supportive Healthcare for Cancer

Chapter 1

Introduction Cancer is not a single illness, but an umbrella term used for a group of diseases displaying malignant tumors or abnormal cell growth. Cancer presents itself differently in each human being and each body responds to cancer, and its treatment, in a unique way, which makes it an even more challenging illness to understand. Though medicine and research is inching towards a cure for cancer, it has only been partially successful in this endeavor. Cancer is one of the most complex illnesses to deal with, for doctors, patients and for caregivers. For doctors the difficulty lies in identifying and isolating abnormal cells from healthy ones and destroying them. Oncology has made significant progress in this regard in the last 150 years. For patients and caregivers, it is the anxiety and uncertainty that becomes unbearable for they struggle to manage a complex sociocultural. It is an illness that comes heavily loaded with metaphors and misconceptions, and affects various aspects of their lives. Can we design an intervention to support the patient and caregiver socially, emotionally and spiritually?

1.1 Need: â&#x20AC;˘ Cancer patients and caregivers need emotional and spiritual support along with medical treatment to lessen the suffering of treatment. â&#x20AC;˘ There is a lack of platforms that address the deep psychological needs to people in illness. This platform may be developed into a tool for psychotherapy through visual storytelling. â&#x20AC;˘ Cancer is a taboo in our society and there is a need to change the discourse of cancer as well and find ways of changing misconceptions and mindsets in the long run.

1.2 Problem Statement: To design a supportive healthcare intervention that alleviates anxiety amongst cancer patients and caregivers.

1.3 Aim: The aim of Cellular Fiction is to alleviate anxiety amongst cancer patients and caregivers to enhance the quality of life during and post treatment.

1.4 Objectives: • The project intends to transform the negative discourse around cancer in the Indian society into an optimistic one and open the black box of cancer in a positive manner. • The primary objective of the project is to provide a supportive healthcare platform that compliments the course of targeted medical treatment. • This platform must address the patient’s emotional and psychological needs by providing a collaborative third space by combining concepts from psychology, literature and design.

Chapter 2

Literature Review 2.1 Cancer: Suffering and Care Cancer is a group of disease involving abnormal cell growth with the potential to invade and spread to other parts of the body. The conventional treatments for cancer, which are surgery, chemotherapy and radiation therapy, have significant side effects. Managing the symptoms of cancer and of its treatment is a painful experience for the patients. It is an equally stressful experience for the caregivers. The side effects of cancer treatment include disorientation, severe fatigue, abnormal weight gain or loss, severe nausea, insomnia, hair loss, skin darkening, anemia, bleeding problems, and low immunity. Cancer patients are commonly found to suffer from depression due to the long span of the demanding treatment, which may last anywhere from six months to two years, sometimes even longer. Apart from the physical suffering of the side effects of treatment, the patient fights a personal battle with the social and cultural facets of the illness. The illness often forces patients to become dependent on family and friends for emotional, physical and financial support. It often also results in the loss of a steady income and immobility resulting in strenuous relationships. The patients and caregivers are also subject to social stigmas and misconceptions prevalent in society. The diagnosis of the illness and the subsequent course of treatment are extremely taxing on the caregivers as well. The sudden changes in relationship dynamics, financial burden, unplanned change in routines, and a lack of predictability also result in tense situations within family and friends. Palliative care is a multidisciplinary approach It focuses on providing patients with relief from the symptoms such as, pain, physical stress, and

mental stress of a serious illnessâ&#x20AC;&#x201D;whatever the diagnosis. Its aim is to improve the quality of life of the patient as his/her caregivers. Palliative care can also be perceived as holistic care to the patient, often resulting in more effective treatment. It entails providing physical, emotional, practical and spiritual support to the patient and his/her family.

2.2. Web and Mobile Platforms for Cancer Patients A host of web sites, forums, online communities, blogs, smartphone applications seek to offer emotional support to the patients. Most of the web sites attempt to alleviate anxiety and clarify misconceptions about cancer by giving the user access to credible information. Some web sites, such as www.theconversationproject.com and www.cancercare. on.ca run programs that can be downloaded and used in the form of kits. These programs are to guide the patient and the family through each stage of the illness and treatment. The available smartphone applications in this field, such as Cancer Care Ontario Symptom Management Guide, and Palliative News, are also designed in a way such that they become sources of information. Others, such as Palliativ Portal, are designed to help the patient through practical aspects of the treatment such as maintaining medical records, making doctors appointments and calling for medical help. Apart from dedicated web sites and smartphone applications, there is a host of personal and community blogs where cancer patients are able to share their anxieties and doubts. These online communities, such as www.getpalliativecare.org, help by lending emotional and practical support to the patient. Though there are many online communities for cancer patients and survivors, there are almost none that address the patients in the Indian Subcontinent. Apart from these mainstream web sites and apps, there are thousands of blogs and forums that patients use to vent their anger, show their frustration, share their experience and express themselves. These blogs have a lot more creative energy as the user is not a passive information gatherer but plays an active role by contributing to the platform. These blogs work well at providing emotional liberation through creative selfexpression.

2.3 Storytelling, Fiction and Narrative Therapy Narrative therapy has evolved as a significant intervention for care givers in the medical fraternity. Narrative therapy is a collaborative and non-pathologizing approach to counselling and community work which centres people as the experts of their own lives. A narrative approach views problems as separate from people and assumes people as having many skills, abilities, values, commitments, beliefs and competencies that will assist them to change their relationship with the problems influencing their lives. It is a way of working that considers the broader context of people’s lives particularly in the various dimensions of diversity including class, race, gender, sexual orientation and ability. It is empowering and regenerative in its approach. Stories are the fundamental pivots of Narrative therapy. Stories in a ‘narrative therapy’ context are made up of events, linked by a theme, occurring over time and according to a plot. A story emerges as certain events are privileged and selected out over other events as more important or true. As the story takes shape, it invites the teller to further select only certain information while other events become neglected and thus the same story is continually told. These stories both describe and shape people’s perspectives on their lives, histories and futures. Often by the time a person has come to therapy the stories they have for themselves and their lives have more often than not become completely dominated by problems. These narratives on a timeline have been referred to as ‘problem-saturated’ stories, which can also become ‘identity stories’. Counsellors and therapists engaging with narrative ideas and practices work alongside people in resisting the effects and influences of problem stories and deficit descriptions. In therapeutic conversations this involves listening and looking for clues to knowledge and skills that run counter to the problem-saturated story. Often to be discovered are what begin as thin traces to subordinated stories of intentions, hopes, commitments, values, desires and dreams. With curiosity and exploration these preferred stories and accounts of people’s lives can become thickened and richly described. Thus within a narrative framework, people’s lives and identities are seen as multi-storied versus single-storied. Moreover the focus is not

on ‘experts’ solving problems. It is on people co-discovering through conversations, the hopeful, preferred, and previously unrecognized and hidden possibilities contained within themselves and unseen storylines. To this end, those interested in narrative practices collaborate with people in ‘re-authoring’ the stories of their lives.(extracted from ‘The Narrative Therapy Center of Toronto)

2.4 Interactive and Collaborative Storytelling in Digital Media Collaborative fiction is a form of writing by a group of authors who share creative control of a story. A collaborative author may focus on a specific protagonist or character in the narrative thread, and then pass the story to another writer for further additions or a change in focus to a different protagonist. Alternatively, authors might write the text for their own particular subplot within an overall narrative, in which case one author may have the responsibility of integrating the story as a whole. Interactive fiction is software simulating environments in which players use text commands to control characters and influence the environment. Works in this form can be understood as literary narratives. In common usage, the term refers to text adventures, a type of adventure game where the entire interface can be “text-only”. Graphical text adventure games, where the text is accompanied by graphics (still images, animations or video) still fall under the text adventure category if the main way to interact with the game is text. Narrative and art therapy are widely accepted and recommended approaches at tackling stressful situations and depression. Storytelling, especially on online forums is fast becoming an effective medium of selfexpression and interaction. It presents itself in the form of personal and public blogs, discussion forums, online communities etc. The existing set of tools, i.e. websites and mobile applications, are information driven and do not satisfy the psychological needs of the user. Several collaborative writing websites also exist, but are not particularly designed to be sensitive to people in need of care and support. There is much to be learnt from Interactive fiction, Text and Graphic Adventures from the 70s and 80s, which were a form of active and creative storytelling that has deteriorated over the last few decades. Cancer presents itself in literature, cinema and other popular media, which gives clues to the final form of the project.

Chapter 3

Methodology- Human Centered Design The design follows a Human Centered Design approach. This approach entails five keys steps namely, empathize, define, ideate/brainstorm, prototype and test. An extensive initial research was carried out by informally interviewing patients, caregivers, survivors, doctors and clinical psychologists. First person narrative data was gathered from secondary sources such as patient blogs and cancer support web forums. A detailed thematic analysis was carried out to identify the dominant codes in cancer narratives. From the themes that emerged, an array of design solutions were proposed such as platforms for hobbies, storytelling, journaling, comics and graphic novels, and games. An approach that combines storytelling and graphic novels was detailed out and a series of experiments were designed in order to prototype and test the idea. The experiments designed were in ascending level of complexity, each level adding a layer of rules for the user to negotiate the platform. Data and usage patterns are being gathered to shape the working of the proposed platform.

3.1 Empathize The design problem was vaguely defined before beginning data collection. Data was collected from secondary sources to form a firm footing to launch the primary research. The secondary research included enquiry on topics such as palliative care, management of cancer symptoms, available treatments, and existing innovations in the field of cancer care for a deeper understanding of the problem. Once the secondary data was assimilated, three conversation guides were prepared, one for each, the doctors and experts in the field, the patients and survivors, and caregivers. Extensive informal interviews were conducted over a period of four weeks to gather personal stories and experiences. This was followed by in-context immersion at the Dr.

B. Borooah Cancer Institute in Guwahati. Apart from conducting personal informal interviews, a large number of personal stories were collected from online journals, blogs and forums. All the data was gathered and laid out in order to identify specific recurring themes. A thematic analysis of the underlying oppositions revealed the many layers of cancer that makes it a medically and social complex illness. Observations from primary fieldwork: • Each cancer presents itself differently in every person. • Each person responds to the treatment differently as each body is unique. • The treatment of cancer is designed specifically for every individual, and is specific to the body type of the patient. • Even though the physical and practical aspects of cancer are so diverse in each case, it is observed that anxiety and depression are common to most cancer patients irrespective of age, gender, region, religion, and culture. • The various economic strata face different issues during treatment of the cancer. • The affluent class of society doubts the competence of doctors and tends to move from on doctor to another, from one hospital to another in search of a better treatment. This seriously hampers the effectiveness of treatment, as their bodies are not completing the course of treatment at a time. There is a lack of trust between doctors and patients. The diagnosis of the disease due to awareness and accessibility to medical facilities takes place in relatively early stages of the disease. • The weakest economic sections face different kinds of problems altogether. The diagnosis, due to lack of awareness, negligence and lack of access to medical facilities, is fairly delayed and therefore the patient is diagnosed in relatively late stages. This section of society is under tremendous financial burden due to treatment and tests being expensive. They tend to trust doctors and health professionals but due to the practical difficulties of continuing treatment, a large number of patients discontinue

or abandon treatment midway, again resulting in ineffective treatment. • The middle stratum of the society is more regular with treatment, diagnosis, testing and consultation. There is a strong relationship of trust between patients and doctors. • Even though the incidence of cancer in rural and urban population is comparable, the poor rate of diagnosis in the rural areas adds to the ineffectiveness of cancer treatment. • It is extremely important for the patient to have the support of family, friends or the community while dealing with cancer. The patient must be supported physically, practically, emotionally and spiritually. It is observed that cancer is easier to deal with and treatment is more effective if the patient has strong support system alongside him/her.

3.2 Define Anxiety emerged as the primary problem faced by patients and caregivers alike. The problem statement was refined after reviewing the insights from fieldwork. A thorough analysis of the individual narratives revealed the various themes that contribute to anxiety. Some of the themes identified are listed below: • Physical dependency- patients become incapable of performing actions they used to perform on a regular basis, making them physically dependent on their caregivers. • Immobility- patients lose the ability to move around freely and lead independent lives. •

Fatigue and Insomnia

•

Disorientation

• Financial dependency- due to the prolonged arduous treatment regimen of cancer, patients are unable to continue earning their livelihood and have to eventually give up their jobs and careers, at least temporarily. This situation is made worse by the expensive

nature of cancer treatment. Sometimes, patients are the sole breadwinners of the family and the illness puts tremendous financial pressure on the family. • Blow to Ego- Apart from the financial crunch that patients face due to the loss of livelihood, loss of a steady income is also a social burden as well as hit to the self-worth of the individual. • Depression- The patient typically experiences five psychological states during the illness, namely, shock, denial, negotiation, depression and acceptance. • Change in physical appearance- it is perhaps one of the most dominant themes in cancer narratives. The various side effects of treatment cause the body to change rapidly. Loss of hair, sudden weight gain or loss, skin darkening, radiation and surgery scars are changes that destroy the self-image of the patients. •

Lack of sexual intimacy

3.3 Ideate/ Brainstorm The dominant themes pointed towards a range of possible design directions, some of which are listed below: • Analog game design as an aid to have difficult conversations- an empathy evoking role-playing game that can be used as an aid to converse about issues that the patient and caregiver are facing. This game could be an effective cowvmmunication device, especially in cases of pediatric cancer care where communication between parents and children is of utmost importance. The game would be a pictorial narrative building game that assists the patient in narrating their stories thereby externalizing suffering. • A community platform for sharing hobbies- a community for patients to explore and learn new hobbies. The platform would provide a preoccupation and a constructive distraction to the patient by engaging them in a skill-based activity. This possible direction addresses many psychological issues such as countering the loss

of creativity and income, and of immobility. The proposed platform may turn into a business model such that the patient can continue generating income, even though at a lower scale. â&#x20AC;˘ Digital diaries and journals- an effective communication as well as self-expression tool that would bring patients, family members, colleagues, and friends on the same platform to improve the quality of life of the patient. The patient will be able to make daily entries in the journal. The diary would help effectively plan the course of treatment. This will instill a sense of hope in the patient. â&#x20AC;˘ Interactive comics and graphic novels- a medium for self-expression, free from societal boundaries. Interactive comics give the user a sense of control over the protagonist by giving the viewer the power to make decisions on behalf of the character.

3.4 Prototyping and Testing Ideas and directions were combined around storytelling as the spine of the project. A series of experiment were designed to gauge the collaborative component of the proposed platform. The testing yielded concrete results about how people react and respond to textual stimulus and add to the stories. The experiments are explained in the following chapter.

Search for people, places and things

Hriday

Hriday Gami

April 22 at 1:05am · Guwahati ·

Home

English (US) · Privacy · Terms · Cookies · More

Chapter 4

Lets write some collaborative fiction. This is part of an experiment I am conducting for my design project this semester. The rules are simple. Contribute freely. 1. Take a cue from the previous comment and add a sentence (or more) to the previous comment giving direction to the story. 2. End your comment in such a way that the next person will have at least two options to carry forward the story, in some sense putting the character and/or the author in a dilemma.

Experiments and Observations

Like · Comment · Share Harshika Jain, Surjmani Laishram, Pankaj Upadhyay and 12 others like this. Hriday Gami Francis felt the weight of his body against the hard concrete bench on the riverfront. He lay flat on his back and stared aimlessly into the sky. He was dead tired, but the adrenaline flowing through his veins kept him awake. Minutes passed like hours and hours seemed like days as he wondered if tomorrow will be just another day or will it be the day that changes his life forever. April 22 at 1:05am · Like

Arpan Jyoti Mahanta Francis then took out his weed, rolling paper and a small penknife. He rolled his last joint of the day. With a swift click on his lighter and that crude blunt in his mouth, he drifted away slowly to a beautiful, peaceful place far away. He leaned back against the wall and sat down. Just as the euphoria was sinking in , he felt a hand on his shoulder. April 22 at 1:11am · Unlike ·

Sumit Sute Francis then turned his head around. And smirked back at the familiar drone. The Wallman was humming on the same Bon Iver track Francis was listening to. The walkman his mom gifted, always comes in handy whenever he gets high on grass. This was Francis's favorite passtime, to watch all his life flickering upon the clean sky behind all those leaves of the same tree crown which peeps over the wallman and shadows over their comradery. April 22 at 1:55am · Unlike ·

Mutton Mutton Francis wakes up to realize His Mother gently waking Him up from his trip and urging Him to get out of bed to get ready for work! "Damn", he thinks, 'Another Monday, another week of mindless work at the office". He gets out of bed, freshens up and opens his wardrobe. He cant make up His mind whether to wear the blue shirt that he wore last week, or the grey one that he bought from his first salary. April 22 at 1:56am · Edited · Unlike ·

Chetna Binu The grey one seems appropriate since it's date night. Alicia and Francis have known each other since they were toddlers and a date with her is nothing much to think about. But today is a special day. April 22 at 3:00am · Unlike · 1 Rashmi Badhwar Only if Alicia was really the one he wanted to date. Special day indeed, to find out who and what Francis wanted or was. Will this day Chat (Off) reveal anything different a hidden passion perhaps or end of a cycle so repetitive. April 22 at 3:47am · Unlike · 1 Chandani Patel End of the cycle, Francis decides, and picks the bright yellow shirt he had bought but never worn. He dashed out the door and onto the street, there was a vaguely familiar spring in his step. His courage grew with each stride, today was the day to reveal the truth. He could feel it in his bones. Slowly but surely the plan began to crystallise in Francis' mind as he made his way across the river. He could see the neon lights in the distance, it wasn't far now, few minutes later he turned the corner and walked into the costume rental store. April 22 at 1:51pm · Unlike ·

4.1 Experiment- Phase I

4.1.1 Structure The first phase of the experiment was conducting in an uncontrolled environment. In this phase, users were given the beginning of a story. Users responded by adding to the narrative and taking the story forward. Text was the only medium of expression at the disposal of the users. User response was in the form of a textual description of characters, settings, objects, events and dialogues. The results showed that user unintentionally projected their lives’ stories and their current mental state on to the fictional narrative. The users stepped into the shoes of a character or added another character to fit their personality bringing out the effectiveness of role-playing in a collaborative effort.

Mitalee Parikh The bell rings as he opens the door. Ali, rises from behind the counter and smirks. "Big package or small?" he asks, eager to know Francis' answer. Francis puts his hands together signalling the small. After Ali hands the package over, Francis leaves looking for an empty bylane where he can open it safely.

4.1.2 Limitations

Shailna Wadhwa He is cautiously aware of the small bulge in the folds of his trouser where the package now lay. Wondering what his mother might think of the bargain he turned right around the corner. To his relief, the cobbled lane across the dry cleaners seemed like a perfect place. The fist sized package was neatly wrapped in green with gold trimmings spiralling into a bow.

The story that developed did not have a conclusive end. The contributors were limited by previous additions to the story and did not have the possibility to form a branch to the narrative. There was no overarching theme or genre specified at the beginning of the thread, which resulted in a mixed emotional response. Some of these limitations were addressed in the second phase of the experiment.

April 22 at 2:34pm · Unlike ·

April 22 at 4:45pm · Edited · Unlike ·

Hriday The cool There blue light in theto alley was turningoffinto a soft The starchedGami brown paper. seemed be something about hisyellow. exchange noise from the perpendicular lanes grew louder. The package feltwith different with Ali earlier. But his mind wandered back to his evening date Alicia. It from other to days, a bitafter heavier crisply packed that overly was going be amaybe big night all, orand so more he had expected but in had convinced himself into believing that it’s nothing out of the ordinary. BOOM! He snapped out of his dreamy thoughts. Back to the package now! Was this going to be his last delivery? Was there a catch behind it all? Did the package feel different because of what he was thinking? Or was it his mind tricking him into believing so. Maybe, maybe not.

Time was running out. April 22 at 6:35pm · Edited · Like ·

Rashmi Badhwar The calm hues of blue and yellow turned pale in front of the crying manic screams approaching where Francis sat feeling the crispy brown paper! Lady in her tattered dress accompanied by a man in scrubs, a doctor? Screaming her lungs out "Oh Thank God , bless, heavens" shrieked the lady.... "My Patrick oh my darling Patrick. I was so worried. You missed your medication , I prayed to the gods to keep you safe" Slobbering Francis now Patrick if that? with mushy kisses. Bi Polar, multiple personality disorder or a conniving old lady.... April 23 at 9:16am · Edited · Unlike · Write a comment...

4.1.3 Results and Observations • Online collaboration functions well for writing collaborative fiction.

â&#x20AC;˘ The duration for which the thread remains active is approximately 24 hours. â&#x20AC;˘ There is no definite conclusion to a story, and therefore it is an open text. The story needs to be divided into smaller units such as episodes or chapters.

4.2 Experiment- Phase II 4.2.1 Structure The second phase of the experiment is also designed for an uncontrolled environment. In this phase, the author is given a set of characters at the beginning of the story. Addition of newer characters was discouraged. At any moment, there were two or more parallel narratives being written on the platform giving the contributor a choice of themes and characters to pick from. The contributor could use the point of disagreement as a point of departure and build a parallel thread to the story, as a parallel universe, which most probably would result in a different ending. The length of the story is limited to ten contributions. Once the story is finished, it is archived as an episode and one can start another thread with the same character. The themes of the stories and characters of the second experiment were sourced from the initial fieldwork and analysis. The focus was on departure from normalcy and the sufferings of cancer patients. This helped break down the mammoth malady of cancer into more relatable everyday life situations making it easier for the authors to perceive and respond to. The themes explored were immobility, fatigue, insomnia, change in physical appearance, loss of a steady income, financial crisis, depression, disorientation and a lack of sexual intimacy.

4.2.2 Limitations Based on the feedback, the next phase of the experiment will focus on adding visual stimulus to stories in the form of illustrations followed by adding auditory stimulus to give an immersive experience to the user. The final form of the platform is not yet clear, but is being continually

molded based on patterns of use and modes of interaction with the medium.

4.2.3 Results and Observations â&#x20AC;˘ The introduced characters are not limited to the designed intention and therefore some other means need to be devised to control or limit the extents to which the story deviates from a desirable conclusion. â&#x20AC;˘ It is helpful to keep more tha one story running live at any point in time, thus giving the prospective author a choice. â&#x20AC;˘ Giving a title to the story before it begins is an the logical next step. This may effectively control the overall ambience, mood and genre of the story.

Chapter 5

Discussion and Conclusion Cellular Fiction uses the basic tenets of narrative therapy and art therapy (art as therapy) and intends to combine them into an online platform that provides a third space to cancer patients and caregivers to express themselves in order to alleviate anxiety. The proposed platform functions at many levels, some of which have been identified and concretized during the experiments: • The platform provides an opportunity to the patient to express their thoughts onto a character or story by means of text and visuals. This process of externalization and objectification of suffering makes it possible for the user to investigate and evaluate the problem’s influences. • It provides a sense of momentary control over a fictional characters life, something that the patients and caregivers feel the lack of while battling the illness. • Virtual identities and anonymity of the author help them to create an online alter ego, which functions as a memory of their life prediagnosis as well as instill a sense of confidence and hope for the future. It also helps patients cope with loss of identity and a blow to the ego. • The open-endedness and changing point of view of the story provide a third space to the patient and caregiver, which is free of moral and social obligations. They are free to construct a worldview within the narrative that is unconventional in reality. • Misery loves company- the collaborative platform gives a sense of companionship and community to patients who struggle with relationships and face alienation and loss of dignity. • The platform intends to distract the patient of his/her illness by offering an interactive mode of building and reading stories. It also

provides an audience to the author lending emotional support, which may alleviate stress for the caregiver(s). Current and future issues to be addressed through the project: • Is the forum specific to cancer patients? • How does the forum stay relevant for cancer patients? • How open/controlled are the stories? • How do we ensure sincerity within the community?

The way forward: Systematic buildup of the platform for Cellular Fiction using Narrative therapy. This platform will require various stages: of brainstorming with the caregivers to develop a sustained therapeutic value for the patients, testing the efficacy of the therapy session through testing, evaluating and analysis, creative progression of the therapy that allows for patients to express and build on stories, at the same time give the caregivers enough room to objectively help the narrative build-up.

References

Bibliography: • Benkel, Inger. Loved Ones within Palliative Care – Understanding , Strategies and Need for Support. • Dann, Jill, and Sue Mann. 2008. “Managing Your Emotions,” 32–34. • De Lacy, Martha. 2014. “‘Cancer Was a Blessing in Disguise’: Overweight Hodgkins Lymphone Survivor Rick Keyworth, from Stockport, Beats Disease to Become Personal Trainer | Daily Mail Online.” Daily Mail Online. • Flaskas, Carmel. 2007. “Holding Hope and Hopelessness: Therapeutic Engagements with the Balance of Hope.” Journal of Family Therapy 29: 186–202 • Frank, Arthur W. 1998. “Just Listening: Narrative and Deep Illness.” Families, Systems, & Health 16: 197–212. • IDEO. 2014. “Human Centered Design Toolkit.” http://www.ideo. com/images/uploads/hcd_toolkit/IDEO_HCD_ToolKit.pdf. • Institute, National Cancer. “Palliative Care in Cancer.” • Kiernan, Bette U. “The Uses of Fairy Tales in Psychotherapy,” 1–21 • Kövecses, Zoltán. 2009. “The Effect of Context on the Use of Metaphor in Discourse.” Iberica 17 (19): 11–24. • “Managing Fear , Anxiety and Panic.” http://www.cancerresearchuk. org/about-cancer/coping-with-cancer/coping-emotionally/cancer-andyour-emotions/fear-anxiety-and-panic/managing-fear-anxiety-andpanic. • Mathieson, Cynthia M, and Hendaikns J Stam. 1995. “Renegotiating Identity: Cancer Narratives.” Sociology of Health & Illness 17 (3 • Morgan, Alice. 2000. “What Is Narrative Therapy?” • Mukherjee, Siddhartha. 2011. The Emperor of All Maladies. Vol. 57 • Salvador, Tony, Genevieve Bell, and Ken Anderson. 1999. “Design Ethnography.” Design Management Journal • Sontag, Susan. 2007. Illness as Metaphor. BMJ : British Medical Journal. Vol. 334 • Bruni, Frank. 2012. “In Art as in Life , a Widespread Disease.” The New York Times. http://bruni.blogs.nytimes.com/2012/02/22/in-art-asin-life-a-widespread-disease/.

• Umesh, Rayasandra, Abhishek, D. C., Mohana, S., Thippeswamy, and K. Manjunath. 2013. • Weingarten, Kaethe. 2006. “Making Sense of Illness Narratives: Braiding Theory, Practice and the Embodied Life.” International Journal of Narrative Therapy Community Work, 1–11. • Wikipedia. 2014. “Management of Cancer.” http://en.wikipedia.org/ wiki/Management_of_cancer. • World Palliative Care Alliance, and Organization World Health. 2014. Global Atlas of Palliative Care at the End of Life. http://www. who.int/cancer/publications/palliative-care-atlas/en/. • Yaskowich, Kyla M, and Henderikus J Stam. 2003. “Cancer Narratives and the Cancer Support Group.” Journal of Health Psychology 8